What is Interstitial Cystitis?
Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), is a chronic condition characterised by bladder pressure, bladder pain, and sometimes pelvic pain. The pain can range from mild discomfort to severe. Unlike urinary tract infections (UTIs), there is no infection present in IC/BPS.
Symptoms include:
- Pain: Often felt as a burning sensation in the bladder, lower abdomen, urethra (the tube that carries urine out of the body), or vagina.
- Frequency: Needing to urinate more often than usual.
- Urgency: A strong need to urinate immediately.
- Nocturia: Frequent urination during the night.
These symptoms can significantly impact daily activities, including work, sexual activity, and social functioning. The symptoms may remain consistent over time or worsen, with some patients experiencing remission for extended periods.
Who is Affected by Interstitial Cystitis?
IC is considered rare, accounting for less than 10% of patients with inflammatory cystitis. The prevalence of BPS/IC varies widely due to different diagnostic criteria and populations studied, with incidence rates reported from 0.06% to 30%. There are no significant differences in incidence based on race or ethnicity. BPS/IC predominantly affects women, with about 90% of sufferers being female. Can develop at any age.
Why is Interstitial Cystitis Hard to Treat?
IC/BPS is challenging to treat due to its unknown exact cause, which can involve multiple factors such as:
- Autoimmune response: The body's immune system attacks its own bladder tissues.
- Defects in the bladder lining: Allowing irritating substances in the urine to penetrate the bladder.
- Genetic factors: A family history of IC/BPS.
- Infections: Especially recurrent infections.
- Allergies
- Vascular (blood vessel) disease
- Presence of abnormal substances in the urine
- Unusual infections: Not detectable with standard tests.
One theory is that IC is an autoimmune response following a bladder infection, leading to bladder lining damage and neurogenic inflammation and pain.
How is Interstitial Cystitis Diagnosed?
Diagnosing IC involves ruling out other conditions with similar symptoms, such as:
- Bladder infections or UTIs
- Bladder cancer
- Effects of radiation therapy
- Nerve problems
- Systemic diseases like diabetes
- Effects of drugs and chemicals on the bladder
The diagnostic process typically includes:
- General examination: Including a pelvic exam and urinalysis.
- Cystoscopic examination: Under general anaesthesia, the bladder is distended with water, and a cystoscope (a telescopic device) is used to look inside the bladder. A biopsy (a small tissue sample) may also be taken to exclude other conditions.
Recognising the Symptoms and Signs of Interstitial Cystitis
Classical symptoms of PBS/IC:
- Frequency, urgency, and bladder (pelvic) pain
- Early or mild cases: Frequent urination may be the only symptom.
- Severe cases: Patients may need to urinate up to 30 times a day.
- Pain, pressure, and tenderness: Around the abdomen, bladder, urethra, vagina, pelvis (prostate in men), and perineum.
- Pain increases during bladder filling and is alleviated with urination: Although the pain often worsens when the bladder walls touch at the end of urinating.
- Pain worsens with sexual intercourse: (Ejaculation in men).
- Symptoms worsen during menstruation: For women.
- Stress: Often worsens symptoms.
Symptoms often worsen rapidly with time, following a cyclical pattern of "relapse and remit." If untreated, PBS/IC can lead to reduced bladder capacity, bleeding, ulcers, scarring, and in severe cases, urinary incontinence and kidney damage.
Diagnostic Tests for Interstitial Cystitis
PBS is diagnosed based on the symptom complex described by patients. Your consultant will take a detailed history of your symptoms. The severity of your symptoms can be categorised by specialist questionnaires like the O’Leary-Sant Symptom Index.
Tests include:
- Urine analysis and culture
- Prostate examination: In men.
- Imaging: Ultrasound or MRI to exclude structural abnormalities.
- Video-urodynamic assessment: To assess bladder function.
- Cystoscopy and biopsy: Visual inspection of the bladder and biopsy of the bladder wall to look for inflammation, glomerulations (bladder haemorrhages), or ulcers (Hunner’s lesions).
What are the Treatment Options for Interstitial Cystitis?
The treatment of IC/BPS is varied and often involves a combination of therapies. Here are some of the current treatment strategies based on recent research and meta-analyses:
Medications for Interstitial Cystitis
- Pentosan Polysulfate Sodium (PPS): Helps restore the bladder's inner lining.
- Antihistamines: Reduce bladder inflammation.
- Tricyclic Antidepressants: Help relax the bladder and block pain.
- Other oral medications: Including anti-inflammatories, Quercetin, antispasmodics, antihistamines, and muscle relaxants.
Bladder Instillations
- Dimethyl Sulfoxide (DMSO): Introduced directly into the bladder to reduce inflammation and pain.
- Heparin and Lidocaine: Help coat the bladder lining and provide pain relief.
- Hyaluronic Acid (HA): A glycosaminoglycan present in the bladder mucosa, used to treat IC/BPS conditions refractory to conventional therapy. HA is available as Cystistat (Teva UK Limited), in a 40 mg/50 mL dose solution. Studies have shown that weekly HA instillations until symptoms disappear result in significant symptomatic improvements for 60%-85% of patients. Long-term monthly maintenance can sustain these improvements.
Intravesical Injections
- Botulinum Toxin (Botox): Used to paralyse bladder muscles, reducing pain and urgency.
Bladder Hydrodistension
- Bladder distension: Stretching the bladder under general anaesthesia can diagnose and sometimes temporarily relieve symptoms. About 30% of patients report improvement.
Neuromodulation
- Percutaneous Nerve Stimulation (pTENS): Electrical stimulus is applied through acupuncture needles placed in the ankle, stimulating the tibial nerve.
- Sacral Nerve Stimulation (SNS): Involves implanting a device that directly stimulates the bladder nerves through the sacrum in the lower back.
Physical Therapy
- Pelvic Floor Therapy: Helps relieve pelvic floor muscle spasms that contribute to bladder pain.
- Bladder training and pelvic floor exercises: Can help manage symptoms.
- Biofeedback: Helps monitor and manage responses.
- Acupuncture and physical manipulation: May alleviate pain from pelvic floor trigger points.
- Transcutaneous Electrical Nerve Stimulation (TENS): Uses electrical stimulation to strengthen pelvic muscles and block pain.
Lifestyle and Dietary Changes
- Avoiding irritants: Such as caffeine, alcohol, and spicy foods.
- Bladder Training: Gradually increasing the intervals between urination.
- Maintaining a varied, well-balanced diet.
Alternative Therapies
- Acupuncture: Some patients find relief through acupuncture.
- Supplements: Like quercetin and aloe vera, which may help reduce inflammation.
Surgical Options for interstitial cystitis that has not responded
Surgery should be considered only if all available treatments have failed and the pain is disabling. Surgical intervention for PBS and IC is complex and should only be done by specialist surgeons with extensive experience of this work.
- Fulguration and resection of ulcers: Removing or burning ulcers in the bladder.
- Bladder augmentation/substitution: Increasing bladder capacity using a piece of the colon.
- Bladder removal (cystectomy): An option for severe cases, creating a new bladder from bowel tissue or other methods to reroute urine.
How Effective Are These Treatments?
According to a systematic review and network meta-analysis, several treatments show statistically significant improvements in managing IC/BPS symptoms:
- Bladder instillations and intravesical injections: These therapies have shown improvements in pain and urgency compared to placebo groups.
- Combination of therapies: Combining different treatment approaches may offer better outcomes, although no single treatment has proven to be universally effective.
Words of Wisdom from a Consultant Urologist
Managing interstitial cystitis/bladder pain syndrome (IC/BPS) requires a tailored approach for each patient. It's essential to work closely with healthcare providers to identify the most effective treatment combination. Persistent symptoms should not discourage patients, as ongoing research continues to improve our understanding and management of this challenging condition.
